Powered By
| Part of the myPBCteam Stories series |
How I Found the Right Hepatologist for Me
After a disappointing encounter with a hepatologist, myPBCteam member, Cecilia, decided to research specialists to find one who would fit her needs.
Watch More Videos from Cecilia
00:00:00:00 - 00:00:22:19
Cecilia
Before I was diagnosed with PBC, we were a very, very active and busy family. I had a full psychology practice. I was also teaching as an adjunct professor in the evenings. So I was working a lot, and I had my first daughter, who was 3, and I was also pregnant. My symptoms began shortly after the birth of my second daughter.
00:00:22:21 - 00:00:47:01
Cecilia
They began with mostly fatigue and extreme itching on the soles of my feet. I was bounced around from specialist to specialist. I felt like I wasn’t being heard. The final step for my diagnosis was going to a hepatologist. Unfortunately, the first hepatologist that I saw wasn’t the right fit for me. They assumed that I didn’t speak English and called a translator.
00:00:47:07 - 00:01:10:08
Cecilia
When this hepatologist finally came in, they didn’t even bother closing the door, didn’t sit down, didn’t examine me, just looked at me and said, “I know what you have. You have fatty liver disease.” I had all my medical records, all my labs, and I told them, “I don’t think I have fatty liver disease. My primary care physician thinks I have something called primary biliary cholangitis or PBC.”
00:01:10:10 - 00:01:39:19
Cecilia
After that appointment, I was really disappointed. I went home in tears, and I realized that I needed to find someone who knew the Latino community, someone who had worked with an ethnically diverse population. So I went on a hunt, and I had scheduled appointments all across the country. My hepatologist really is a unicorn. He values the patient experience and the patient word.
00:01:39:20 - 00:02:14:23
Cecilia
For individuals newly diagnosed with PBC, my advice would be: don’t give up — ever. Don’t stop looking for answers. Find a team that you feel comfortable with, the team that treats you with respect and that listens to you, and do your own research, and join as many support groups as you can, because that’s where you're going to find a community. I vowed that once I got answers, I wouldn’t let anyone else go through that experience again, and remind people that they can be their own advocates, and then they don’t have to feel like they’re less.
00:02:15:00 - 00:02:27:09
Cecilia
My name is Cecilia Dueñas. I’m a member of myPBCteam.
A primary biliary cholangitis (PBC) diagnosis can be life-changing. Cecilia Dueñas was very active and had a full work schedule. After the birth of her second daughter, she began experiencing symptoms like fatigue and severe itching on the soles of her feet. These symptoms were just the start of her journey with PBC.
After a disappointing encounter with a hepatologist, Cecilia decided to research specialists to find one who would fit her needs. She focused on hepatologists who specialized in PBC and had experience treating an ethnically diverse population. Over time, Cecilia finally found the right specialist to treat her PBC.
Getting a diagnosis for PBC can be difficult. It’s a rare disease, the symptoms aren’t very specific, and you may encounter other barriers within the healthcare system. For those living with PBC, Cecilia has some words of advice:
On myPBCteam, people share their experiences with primary biliary cholangitis, get advice, and find support from others who understand.
Have you been diagnosed with PBC? What was your journey to a PBC diagnosis? Let others know in the comments below.
Get updates directly to your inbox.
Looking For A Hepatologist In SC That Is Experienced With PBC. WHERE DO I START?
Continue with Facebook
Continue with your email
Become a member to get even more
Join
A myPBCteam Member
I have learned you need to specifically ask if the medical provider has experience with PBC patients. Just because someone is a hepatologist, that does not mean they have any experience treating PBC… read more
We'd love to hear from you! Please share your name and email to post and read comments.
You'll also get the latest articles directly to your inbox.